It gives me great pleasure to introduce the second Annual Report for Europa Uomo which sets out,
for our members, supporters, interested parties and the health authorities, what we have done,
what we have achieved over the past twelve months and to give some indication of our future
plans, subject to the General Assembly’s direction.

My name is Ekkehard Büchler. I am prostate cancer surviver. I was diagnosed with a high risk prostate cancer and operated in 1993. As you can see, I am still alive.

„Selbsthilfe Prostatakrebs“ was founded by Professor Zechner, the former chief physician of the urological department at the Wilhelminen Spital in Vienna, and myself in 1997. We will celebrate 20 years Selbsthilfe Prostatakrebs this November.

Over the years our patient initiated prostate cancer education and support group has developed very well, it was a founding member of ECPC, the European Cancer Patient Coalition and of Europa Uomo – The European Prostate Cancer Coalition, where I held the position as vice chair until yesterday. Within Selbsthilfe Prostatakrebs, I will be the chairman for the next 4 years.

Our aims of our support group are as follows:

We want to offer men diagnosed with prostate cancer the possibility to talk to others in the same situation about their fears, problems, and conflicts, and to communicate their own experiences and feelings, in order to be able to help each other by understanding and learning from each other.

At workshops, meetings, we offer possibilities to listen to specialist presentations held by experts and then discuss the topics, in more detail, with the respective speakers.

Those concerned are to become „responsible and mature patients“ who are well-informed about their illness and who are empowered to help make an educated decision about which therapies are relevant and appropriate for them in consultation with their respective doctors.

What is most important for us as patients? The main questions: Will we be healed?, and what side effects will we have? What about our quality of life?

This is a question nobody in Austria can answer. And why not? A patient in Austria is diagnosed with prostate cancer and is treated in a hospital. And then he leaves the clinic with a report and is sent to his urologist. And the clinic has in most cases no, absolutely no idea how their patients are after they leave the hospital. Are they still alive or what side effects do they have?

In Sweden, for example, there is already a well-established cancer register, which is sadly missing in Austria!

The urological clinic of the MedUni Vienna has started a program called ICHOM. This is a very strict quality control of treatments. In Germany, the Martini Clinic has been using ICHOM for a couple of years and the outcome is that the Martini Clinic is now one of the leading urological clinics in the world!

But most important is an excellent relationship with our doctors! They are the ones who can save our lives.

Selbsthilfe Prostatakrebs and I are in the very lucky position of having Prof. Shahrokh Shariat as our mentor and personal friend since he is in Vienna.

In 2012 Prof. Shariat was voted best urologist oncologist in New York. He was twice selected as one of the leading urologists in the USA.

He is the only person to have been awarded both the top prizes for urology. 2014 the EAU Crystal Matula Award and now the AUA Gold Cystoscope Award just recently in Boston on May 16th 2017. He was the first person outside the USA to receive this prize.

Many top urologists from Vienna and Lower Austria are holding presentations and discussions at and with our support group.

We regret having no ways to talk and deal with our politicians. We, the prostate cancer patients and survivors have such an enormous knowledge about our problems and the politicians just do not want to know the real facts.

I hope you enjoy our seminar today. If you want to know more about prostate cancer, just join our prostate cancer education and support group. For 2017, it is just € 25.

The American Urological Association (AUA) has honoured Shahrokh Shariat, Head of MedUni Vienna’s Department of Urology, by awarding him its prestigious Gold Cystoscope Award.

In so doing, the prize jury was recognising Shariat’s contribution to urologic oncology in the areas of epigenetics, oncology biomarkers and predictive nomograms.

Shariat is the first person from outside the USA to win the prize. “It is a particular honour for me and is testament to the growing international importance of the work of our team here at the Medical University’s Department of Urology,” says Shariat, delighted at the award. “It is great that our contribution to urologic oncology is so highly valued throughout the world.”
The prize will be presented at the AUA’s annual conference in Boston (USA) on 16 May 2017.

Since 1977, the American Urological Association (AUA) has awarded the annual Gold Cystoscope Award to urologists for outstanding achievements in their field. Founded in 1902, the AUA’s mission is to ensure the highest standards in education, research and healthcare policy. It has a membership of approximately 19,000 and publishes the “Journal of Urology”.

About Shahrokh Shariat
Shahrokh Shariat came to Vienna from Teheran (Iran) as a child, completed his secondary education here and studied chemistry and mathematics at the Swiss Federal Polytechnic in Lausanne before switching to a medical course at MedUni Vienna. After gaining his doctorate, Shariat went to the USA, where he completed a Research Fellowship at Baylor College of Medicine in Houston, Texas, and did his specialist training in urology at the University of Texas in Dallas. Shariat specialised in urologic oncology at the Memorial Sloan-Kettering Center in New York,.

From 2010 to 2013 he headed up the bladder cancer unit at Weill Medical College of Cornell University in New York.

Since June 2013 he has run the Department of Urology of MedUni Vienna at Vienna General Hospital.
Shariat has written a total of 900 peer-reviewed publications and holds four patents, which were generated from his research work in the field of prostate and bladder cancer. His Scopus h-index (Hirsch factor) is 76, his Google h-index 100. In 2012 he was voted best urologic oncologist in New York. He was twice selected as one of the leading urologists in the USA. He is the only person to have been awarded both the top prizes for urology: 2014 EAU Crystal Matula Award and now the AUA Gold Cystoscope Award 2017.

In the past decade the science of genetics had expanded greatly and with the mapping of the human genome scientists have been able to understand mechanisms that tumour cells use to confuse the body’s defences and allow tumours to grow. Clinicians have now been able to develop ways to “unmask” the cancer cells and to allow the body’s natural defences to recognise the tumour cells as foreign and shrink or eliminate the tumour. Update will reference a series of articles about immunotherapy. A great deal of research is taking place in the field of prostate cancer using immunotherapy techniques and there is great hope that this will prove a boon in the treatment of the disease. The following article in Cure Today may act as an introduction to the topic.

After more than 40 years working as a credit controller with a leading British telecommunications company, Ken Mastris was greatly looking forward to retirement. With a hefty stockpile of vacation days, he decided to take some time off to travel abroad and enjoy a well-deserved holiday. While on the month-long trip, Ken started to notice some physical changes. He was not passing urine as frequently as he normally would, but chalked it up to nothing more than his body’s reaction to the hot August weather and possibly dehydration.

Prostate cancer is the most commonly diagnosed cancer in men with more than 417,000 new cases and 92,000 deaths in Europe recorded each year.

Currently, 1 in 7 men in Europe will develop detectable PCa before the age of 85. More than two million men in Europe are living with this disease.

PCa is a malignant tumour in the prostate. Most of the tumours develop slowly and do not cause any symptoms. The risk of getting PCa increases with age. PCa is in early stage generally asymptomatic, which means that there are no clear symptoms to indicate its presence. In most cases, symptoms such as trouble urinating are caused by an infection or by benign prostatic enlargement (BPE), a non-cancerous growth of the prostate. If PCa does cause symptoms it is usually a sign that the disease is at an advanced stage. The symptoms of advanced PCa include: rapid onset of local symptoms or pain in the hips, back, chest, or legs from cancer that has spread to the bones and blood in the semen.

Thousands of prostate cancer survivors affected by erectile dysfunction are being abandoned without adequate support, new Freedom of Information (FOI) data obtained by Prostate Cancer UK has revealed.

Today, the UK’s leading men’s health charity has issued a warning that patchy, insufficient care for erection problems is leaving men across the country with unnecessary long term physical and psychological damage, and is calling on the nation to take action by campaigning for better care in their area.

Erectile dysfunction is a common side effect of prostate cancer treatment, affecting 76% of men who have been treated for the disease but it can often be treated if the right care is available.

However, the results of recent FOI requests issued by Prostate Cancer UK reveal a dramatic post code lottery of support with just 13% of local health commissioners across the UK providing the breadth of treatment and services needed to give men living with this challenging condition the best chance of recovery. These findings are reinforced by the results of a survey of over 500 men with erectile dysfunction after prostate cancer treatment, in which as many as 1 in 4 (24%) men claimed no one offered them support or medication to deal with the issue.

John Robertson, Specialist Nurse at Prostate Cancer UK said; “When it comes to treating erectile dysfunction following prostate cancer treatment, early support and treatment is vital.

“As a specialist nurse, I regularly speak to men at rock bottom because they can no longer get or maintain an erection. Not only can it put a complete stop to a man’s sex life, it can have devastating longer term implications including depression and relationship breakdowns. It is therefore incredibly concerning that only a handful of men are getting the support needed to overcome this condition and it’s shocking that in some areas men aren’t getting any support whatsoever.”

It is the responsibility of commissioners (CCGs in England, Health Boards in Scotland and Wales and Health & Social Care Trusts in Northern Ireland) to bring about change at a local level. In a bid to put a stop to the wide disparity in care, Prostate Cancer UK is calling on the public to put urgent pressure on health funders in the worst performing areas to ensure they are held accountable for improving access to treatments and support.

Recent treatment guidance for erectile dysfunction produced by Prostate Cancer UK and Macmillan Cancer Support recommends early intervention and a choice of five treatment and support options in order to give men the best chance of recovery. Treatment and support should include access to a NHS erectile dysfunction clinic, an appropriate choice of medication including daily low dose tadalafil (Cialis®), vacuum pumps, and access to psychosexual clinics and counselling services. Erectile dysfunction clinics are widely regarded as the most essential service, as they provide support across both physical and emotional needs and help men to understand what they should expect at each stage of their recovery. However, the FOI results revealed that only half (51%) of commissioners could confirm that they offer this as an option. Two commissioners admitted that they offer no support whatsoever and almost 1 in 5 (17%) were completely unaware of the arrangements in their area. 17 commissioners failed to provide satisfactory information for all questions raised in the request.

Robertson continued; “This is an issue that has been swept under the carpet for too long and thousands of men have been left to suffer in silence. Erectile dysfunction is a debilitating health condition and it must be taken seriously by the NHS and commissioning groups. Now is the time to take action – everyone can do their bit to make sure men across the country get access to the vital support they need.”

Brian White from Leeds (42) was diagnosed with prostate cancer at the age of 41. He had an operation to remove his prostate in October 2015.
“My partner and I were made fully aware of the possible side effects – incontinence and erectile dysfunction, but at the time I was so focussed on getting rid of the cancer – the longer term implications didn’t really come into question.

“One year down the line and I’m still in remission but I’m living with the harsh side effects of my treatment. Thankfully my incontinence is much better but I’m still struggling with erections. I’m only 42 and my partner is 36. Sex and intimacy is so important to us, as it is to most relationships and adjusting to a different way of life has been incredibly difficult. The spontaneity of our sexual relationship has gone and now every intimate moment has to be planned well in advance.

“Things are certainly improving but the road to recovery is a long one. I want to make everyone aware that support for erectile problems shouldn’t be a ‘nice to have’ – it’s essential. Before any man undergoes treatment for prostate cancer he needs to be safe in knowledge that there is appropriate care on the other side to help him with the aftermath. The fact that some men don’t get access to any support whatsoever is shocking.”

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